It's safe to say Looking Upwards has experienced it all when it comes to disability housing and services. Founded in 1978, the organization has seen deinstitutionalization up close and personal as they welcomed individuals previously institutionalized into community-based settings. They've operated through the alphabet soup of disability legislation -- CRIPA to ADA to ACA. They've served people with diagnoses that didn't exist when the organization was founded. Today, with an annual budget of $13M, Looking Upwards is one of the largest disability service providers in the state of Rhode Island. They provide services and supports to over seven hundred individuals with disabilities with a variety of abilities, diagnoses, and needs.
It's often said that "if you know one person with a disability, you know one person with that disability," summarizing the, what should be obvious, fact that no two people with disabilities are the same. Even within the same diagnoses -- autism or cerebral palsy or anything else -- the needs and abilities of individuals can range significantly. The idea that one type of service or housing model can meet the needs of the entire disability community is misguided. What one person with a disability needs, or, perhaps even more important, what they want in housing and supportive services isn't the same as another person. And, what people need and want may change throughout their life.
Looking Upwards works hard to meet the diverse needs of the diverse population of people with disabilities. Their Executive Director, Carrie Miranda, who started out as a direct-service professional thirty years ago, says that at Looking Upwards "anybody can walk through the door and we can work really hard to figure it out". While there is space for specific housing models and supports designed to target specific needs within the disability community, Looking Upwards achieves the important goal of meeting diverse needs and supporting choice through the customization of housing and support services. They support adults with disabilities that range from intellectual disabilities, cerebral palsy, autism, multiple disabilities, traumatic brain injury, mental illness, and beyond. They were the only provider I visited that supported individuals in every single type of HCBS-eligible residential setting (family home, apartments with varying levels of care, group homes, and Shared Living Arrangements). Beyond limitations of what's allowable, Looking Upwards works hard to creatively meet needs of a wide range of individuals.
Looking Upwards residents like what they've made possible... Hope celebrates having her "very own" kitchen and laundry room in her group home. Bob likes greeting the other residents outside of his apartment building every afternoon. Kelsey likes wheeling out to her deck for an afternoon with her housemates. Mary gets just the right amount of support she needs in the apartment she shares with her husband. Ali likes sharing meals and outings with her roommates in her shared living arrangement.
Looking Upwards also serves people across a spectrum of ages. Something that has always struck me as strange in disability policy and service delivery is that there seems to be supports designed for people age 0 through 21 and then 22 through the end of life. It's a strange concept that someone who is 22 would need the same services or live in the same places as someone who is 62. I mean, I love my older relatives and colleagues, but I wouldn't necessarily put them at the top of my desired roommate list... Yet, that's often the reality for people with disabilities.
There are great variations in the kind of housing or daily activities that are appropriate for or desired by people of different ages; this is no different for the population with disabilities. A young adult may prefer home with several roommates. A woman in her 40s might want to live somewhere quieter on her own. A 85-year-old man might require skilled nursing care. We should be prepared to address the way needs and desired housing arrangements may change over time. It likely will not be the case that someone with a disability should or will want to live in the same place from the time they turn 22 until the end of their life. It's not the case for most of the population; We cannot not make that assumption or design programs in that way for people with disabilities.
Diversity of options means that Looking Upwards can serve individuals as they age and circumstances change, providing some consistency even as residence types shift. There are Looking Upwards clients who first received supports and services as adults living in their family home, then in an independent apartment setting, and then in a group home setting that could meet the increasing complexity of their needs as they age. Looking Upwards provides the valuable opportunity for residence and service type or level to change as people age.
An unfortunate reality is the fact that disability is often overlooked as a public policy, community development, or diversity priority. Then, when it does get acknowledged, I'm always surprised by how often very educated people, even those with heightened sensitivity around issues of diversity and inclusion, make grossly generalized statements about "the disability community".
Regularly, assumptions are made about the entire population based on one interaction or experience. With little questioning, people accept the fact that standardization is necessarily a good thing across a spectrum of disabilities. We don't hesitate before assigning one time of service or policy to the entire population. Most would be horrified if a policy limited all black people to one housing option or said one service was universally needed by all immigrants. But we make those kind of assumptions and generalizations for people with disabilities all too often. It's important that public perception, policy design, residential offerings, and regulation in disability services reflects and supports the diversity within the population. Looking Upwards and other service providers have embraced the diversity in the disability community; it's time for the rest of us to catch up. In disability services, one size does not, and will likely never, fit all.
Part of a series on disability housing in the United States... Know an organization making a difference in or have a new idea about housing for people with disabilities? Tweet me @micaelaconnery.